We asked a couple of our attendees to write about their experience attending a group visit with The Kortney Rose Foundation (KRF) to the Children’s Hospital of Philadelphia (CHOP) to learn more about the research KRF supports including the Children’s Brain Tumor Tissue Consortium (CBTTC) and a tour of the bio repository.
Blog Post written by Amaris Pollock, Council of Advisors, KRF
Many people are affected by cancer, either they know someone who is fighting to be a survivor, or they have lost a loved someone to the disease. There are many researchers dedicated to eradicating the cancer threat from our lives, trying to achieve medical therapies to treat and place each strain into remission, but previously most studies were conducted independently and in secrecy until their results were published.
Researchers who coveted their findings did so in hopes to lay claim to the cure that would finally be the most effective for a specific cancer. To answer the need for transparency, the researchers at CHOP had a vision of bringing pediatric brain tumor researchers together to share results in real time.
In 2009, Drs. Peter Phillips, Tom Curran and Jay Storm led the way launching the Children’s Brain Tumor Tissue Consortium (CBTTC). Although some researchers are still apprehensive to share and join, the CBTTC has gained many researchers who wish to join a team of scientists willing to be involved with scientific transparency. This kind of open collaboration was unique, and many research institutions were open to joining a team with this type of scientific approach.
The CBTTC is the largest bio repository of pediatric brain tumor specimens in the world. All of these specimens are genetically sequenced. Once sequenced, that data is available to any researcher who submits a research project study for approval of the CBTTC. Any research scientist who wishes to utilize that database and has their project approved by the CBTTC, is then given access to all of the accrued data in the CBTTC repository. The caveat of using CBTTC’s data is that the researcher must share their findings as well, adding to the collective bio repository data base. This share-for-share level of scientific transparency creates a larger selection of informative data for use by researchers in their work to help patients afflicted with cancer.
The creators of the CBTTC knew that they needed to go outside of the National Institute of Health (NIH) funding model if they wanted to build the CBTTC in a timely manner and obtain their goals for the entity. They engaged with charities to find financial support. One of those charities, which has worked with the CBTTC from its inaugural date and still sponsors the program, is The Kortney Rose Foundation. The founder, Kristen Gillette, always wanted to support research where hospitals and researchers worked together, and Mrs. Gillette still works closely with the team involved with the CBTTC.
With KRF and other charities financial support, the CBTTC was fully funded by philanthropic financiers, without any grants from the NIH. What began with 4 U.S. based children’s hospitals working together on pediatric brain tumor research has now grown into 17 institutions collaborating worldwide. With all the repository specimen samples available, there needed to be a mechanism to get the information out to researchers as quickly as possible with the goal of real time feedback. So In 2016, CHOP also launched the Center for Data Driven Discovery in Biomedicine (D³b) which houses both the CBTTC and CAVATICA*.
The National Institute of Health (NIH) has recognized the importance of collaborative researcher efforts and in 2017 launched the Gabriella Miller Kid’s First Research Act which is the largest pediatric research program ever undertaking by the NIH. CHOP is one of 6 institutions tasked with creating the largest of its kind Data Research Center (DRC) which will collect data on many different pediatric diseases to cross reference any intersections that may arise between diseases and lead to discovery.
In a small amount of time the scientific biomedical research sharing program initiated by the doctors at CHOP has grown into a much larger entity. With the help of charitable organizations like The Kortney Rose Foundation, individual donors, governmental financial aid, and congressional laws, the future outlook on finding the therapeutic cures for all forms of cancerous growths is closer than ever. By making research results and specimens available in a much more accessible forum, the CBTTC’s programs are integral to our future medicinal research.
*CAVATICA is the name of the pediatric cancer data cloud built to allow for quick and real time access to the data produced from the biospecimens in the CBTTC. Dr. Resnick is the Director of D³b and the Scientific Chair of the CBTTC and worked with Amazon to curate the CAVATICA cloud-based system.